Chronic Head Pressure Pain
It was April 5th, 2013, when I first noticed an odd headache right at the crown of my head. It felt as if someone were pressing the end of a ballpoint pen onto the top of my head. It wasn’t painful, but it didn’t feel normal. I was visiting my brother at the University of Missouri, looking forward to a fun weekend, including a nighttime 5k race. At the time, I was 20 and planning to transfer to the University of Missouri, eager to get a feel for the campus.
Unfortunately, I had this new headache all weekend, but I managed to get through the 5k race and make the most of the trip. On my 2-hour drive back home to St. Louis, I noticed something off in my visual field. Little did I know, this would be the last time I would ever feel normal again.
A few days passed, and I continued with life, but the headache started to concern me as it wasn’t going away. I would wake up with it and go to sleep with it. After a week, the headache was no longer just an ache, it had transitioned into head pressure. It became an intense and debilitating dullness, as if my brain were sagging into my neck. Then I started experiencing constant dizziness.
At this point, I did what many others would do: I hopped on Google and plugged in my symptoms. In hindsight, Google is a terrible place to start when searching for symptoms, as it always assumes the worst. Sure enough, the first thing that popped up was brain cancer. This triggered considerable anxiety, which only fueled new symptoms. Thanks, Dr. Google—I was now becoming a hypochondriac.
After a couple of weeks with no relief or any signs that the head pressure was lessening, I started to wonder if I should go to the hospital. I remember waking up around 3 a.m. one night with blurry vision and my visual perception was off, leading to feelings of derealization. This was my last straw. Still living with my parents at the time, I went upstairs, woke them up as calmly as possible, and told them that I needed to go to the ER.
I was seen quickly, and they ran blood work and a CT scan without contrast. I was fully expecting the worst, but the doctor came in and said everything was normal. I was sent home with no further instructions.
After the ER visit, I tried to move on, but I wasn’t getting better. I remember thinking that this head pressure might be here to stay for a few months. Oh, how I wish it had only lasted a few months. During this time, I went down the rabbit hole of medical conditions on Google. My health anxiety intensified, which didn’t help anything and soon turned into a general anxiety disorder. Fear of the unknown is a scary place to be.
Finding Treatments
I found a primary care doctor, and during my first visit, I was visibly anxious, desperate to understand what was happening to me. The doctor quickly diagnosed me with GAD (General Anxiety Disorder) and prescribed Lexapro, a popular antidepressant. He believed my symptoms were caused by anxiety, given my normal blood work and CT scan results. I accepted the diagnosis and thought maybe he was right.
Unfortunately, Lexapro didn’t touch the head pressure, and I experienced every rare side effect possible while on it. I had confusion, electric shocks, dizziness, constipation, shaking, no erections, a rapid heartbeat, and several other issues. I powered through for a month, and the side effects started to lessen, but the head pressure persisted.
After discussing it with my doctor, he recommended increasing the Lexapro dose from 10mg to 20mg. This proved to be a bad idea, as I started to feel numb, lost interest in everything that brought me joy, and became severely depressed. After a couple of months on Lexapro, I decided to slowly wean off it, as I felt it was making things worse. It took about a month to completely wean off. I wanted to take it slow to minimize side effects as much as possible. After my last dose, I quickly felt clarity again, and the fog began to lift.
Following my primary care visit, I received a referral to a headache specialist who thought I was dealing with migraines. I tried a couple of migraine medications, but they didn’t provide any relief from the head pressure. I stayed on each medication for a couple of months, but the side effects were also unpleasant, so I discontinued them. I began to realize that I was dealing with something much more complex and needed to start advocating for myself.
Triggers
Identifying triggers was tough and confusing. I had a baseline level of head pressure intensity, which seemed to worsen as the day went on. Simple tasks such as folding laundry, washing my hands over the sink, bending over, and certain body positions would exacerbate the pressure. My head felt heavy 24/7, like there was a 20-pound crown on it. The pain wasn’t sharp or excruciating, like a broken limb, but rather a debilitating dullness that made it hard to function.
I found myself lying down often, as it was the only thing that brought relief. That’s when I made the connection that lying flat relieved the head pressure by about 90 percent, but it immediately returned as soon as I was upright. I thought this was a clue. I saw a neurologist who ordered a head MRI with contrast, which came back as unremarkable. Now what?
Despite the chronic pain, I was fortunate enough to remain active. I could swim, bike, and run. Although I experienced discomfort and the head pressure was always present, the intensity was slightly lower during workouts. However, it would return as soon as I stopped and feel even worse.
I continued to manage the pain as best I could, all while trying to get through college at the same time. A year quickly passed, and that’s when I started to feel something new in my body.
New Symptoms
After a year of dealing with chronic pain, I developed a new symptom seemingly out of nowhere. My tailbone felt extremely bruised. It was painful to sit, squeeze, or strain. Additionally, I felt a dull pressure around my mid-back, like someone was pressing on my spine with their finger.
At the time, I was doing a lot of cycling and triathlon training. I thought the symptoms were related to my position on the bike saddle and tried to rest and heal. This went on for a month until I saw my neurologist again. The neurologist ordered a spine MRI, which detected a couple of minor bulging discs in my lower back but was otherwise normal.
The constant bruising tailbone pain lasted for about three months before it started to settle down. I noticed that whenever I sat cross-legged or did any type of stretch or bending, I felt an uncomfortable pulling sensation from my tailbone up to my neck.
Over time, the bruising sensations came and went, lasting only a couple of days instead of months as before. However, the spine-pulling sensation remained a daily symptom.
Years of Managing
As I write this post, it’s difficult to reflect on the first five years of this mysterious illness. It’s a bit of a blur, and I know there were many other symptoms I dealt with on a day-to-day basis that I subconsciously try not to remember. However, I made it through college, and I’m proud of myself for that. Pushing through classes every day, living on a tight budget, scrounging up money to buy food and pay rent, and dealing with life, in general, is hard enough. Tackling a chronic illness, which is a full-time job in itself, made graduating from college a huge accomplishment.
During those five years, I was put through the wringer of specialists and testing, all of which came back normal. I was poked, prodded, and imaged from head to toe, but there were no answers, no relief, and no next steps. I wish I could say things got better, but in 2019, I started experiencing a wave of new symptoms after one of the worst stomach bugs I’ve ever had. I’ll go over this in Chapter 2: The Stomach Bug.
Have you or a loved one dealt with something similar? Leave a comment below!
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